Emerging Realities

By Diane Richler

“As long as there is one institution in (my province), there is a risk that my son will land up there, so I have to keep fighting.”

An unprecedented $1,000,000 in damages was awarded to former residents of an institution, the Pavillion St. Theophile, by the Quebec Human Rights Commission on January 25, 1991. The damages, the largest ever recorded in Canada for human rights violations, were ordered paid to the 88 former residents on recognition of their allegations of abuse, exploitation and poor treatment. The Commission decided that the former residents had been exploited by being made to work at the institution without pay, that their spending money had been misappropriated and that they had been treated in a manner which could be characterized as punishment and deprivation. It is not surprising that the decision is being appealed.

The Commission expressed concern that the situation uncovered at St. Theophile was not unique, and called for the protection of all persons receiving services within provincially funded institutions.

In fact, the conditions uncovered come as no surprise to people familiar with institutions for adults and children who have been labelled mentally handicapped. In the fall of 1990, the Provincial Auditor in Ontario uncovered previously unreported deaths in Brantwood and Christopher Robin nursing homes for children with mental handicaps. Most of the deaths were the result of malnutrition and other problems caused by extended and prolonged lack of appropriate care.

In response, many people have called for better monitoring mechanisms, such as the Advocacy System proposed for Ontario; for better staff training; and for better staff-to-resident ratios. However, improving staff quality and quantity, and legitimizing advocacy mechanisms will make only cosmetic changes to the existing system, while the fundamental weaknesses remain untouched. Investing heavily in an advocacy structure without at the same time improving the existing system appears tantamount to providing consumers with a warranty without allowing them access to any merchandise.

Advocates working with and on behalf of people who have been labelled mentally handicapped identify institutions as the linchpin of the current regressive, oppressive service system. On the one hand, institutions often systematically abuse the people within by depriving them of their basic rights and freedoms. (Cases such as St. Theophile, Brantwood and Christopher Robin demonstrate much more dramatic abuse). On the other hand, institutions absorb so many resources, with their high per capita costs, that they prevent a more equitable distribution of resources to a larger number of people, including those now unserved or underserved in the community.

Although attitudes are gradually changing, many people believe that institutions are still protected by a halo effect because of their traditional medical model. There are unfounded beliefs that institutions have unequalled medical equipment and specially trained staff for special residents. The reality is different: acrid smells; muted sounds of people mumbling to themselves in their private worlds; the pitiful sight of people in ill-fitting clothes, sometimes rocking back and forth, sometimes tied into place, often heavily medicated, staring blankly into space; empty days that repeat endlessly.

The Beginning Of The End

The institutional model was first seriously questioned as an appropriate response to the needs of persons with an intellectual disability in the late 1960s and early 1970s. At that time the rehabilitation movement had emerged after the Second World War, the Human Rights Movement in Scandinavia had evolved into the concept of normalization for persons with a mental handicap, and the civil rights movement swept North America. These factors were part of a growing realization that better supports could actually minimize the degree of handicap from an intellectual disability and that it was unjust to deprive people of their rights on the basis of disability.

In 1981, the Government of Canada signalled its recognition of changing trends in providing supports to people with mental handicaps. OBSTACLES, the report of the Special Parliamentary Committee on the Disabled and the Handicapped, included a recommendation to promote independent living rather than institutionalization.

In1988, after extensive discussions with the Canadian Association for Community Living (CACL), the national advocacy organization for persons who have been labelled mentally handicapped and their families, the Government of Canada endorsed a policy of deinstitutionalization. It indicated a willingness to discuss funding options with provincial governments which could support all people labelled mentally handicapped to leave institutions within a short time. Most provinces and territories have policies supporting deinstitutionalization, although the actual number of people still in institutions does not reflect these policies.

The CACL proposal endorsed by the federal government suggested that deinstitutionalization was inevitable and that the final results would be cost-effective. However, it recognized the need to invest extra dollars during the transition period when start-up costs in the community would be heavy and before savings would take effect in institutions. Furthermore, the proposal suggested beginning the process in those provinces with fewer persons in institutions. This would make it possible to test different approaches and develop a broader base of experience before totally revamping larger provincial systems. While federal government officials continue to espouse a commitment to deinstituionalization, they have not yet committed the resources necessary to implement their stated intentions.

Overcoming Resistance

There are many anticipated benefits of deinstitutionalization. People now in institutions will regain their constitutional and human rights; they will have opportunities to participate in communities – to have friends, homes of their own, jobs, hobbies; families and friends will be able to provide natural supports; resources will be distributed under a more equitable system based on need. Despite these benefits, the opposition to deinstitutionaliation remains firm. Why? The reason is rooted in history, prejudice, fear, and vested interests.

Any bureaucracy with a long history develops tremendous inertia. The approximately 15,000 people labelled mentally handicapped now living in institutions in Canada are supported by approximately the same number of front line and other support staff within the institutions and by additional layers of bureaucracy at the provincial and federal levels. These people have their own jobs to protect, and they are supported by strong unions. Local communities value institutions as a source of employment and for their large purchasing power of a wide variety of goods and services.

Taxi drivers in Saint John, New Brunswick, who wore buttons unsuccessfully urging everyone to “Save the Roberts” were supporting the William F. Roberts Hospital School as a valuable part of the city’s economy – not as a good place for children to live. Community models of service provision, in fact, provide an equal number of jobs, but they may be spread over a wider geographic area. This is because former residents return to their natural home communities rather than being concentrated in one location. Similarly, parents with sons and daughters living in institutions often advocate for the facility’s continued existence because the institution is the only service available to them. When families meaningfully involved in planning the future for their sons and daughters are shown a range of alternatives, they consistently opt for the community. Finally, communities often worry about deinstitutionalization and the presence of new neighbours.

People in communities often know little about their new neighbours because people with mental handicaps have had few opportunities to be active participants in community life. Once people meet on a one-to-one basis, these fears usually disappear.

Community living in practice.

The meaning of community living continues to evolve. When the first community alternatives to institutions were conceptualized and implemented in North America in the 1970s, the service models provided were not particularly innovative. They were really only adaptations of the institutional service model within the community setting. Usually there was some decentralization of authority and a much wider range of available services, but essentially they remained a hierarchical structure of services nonetheless.

In the 90’s, plans for community alternatives are based on more than just deinstitutionalization. Community living involves the empowerment of individuals, their families and support networks. There is less emphasis on services as the safety net for people, and more of a focus on the individual’s personal “connectedness” to a network of family, friends and co-workers. These people interact just as networks do for people who have never been ostracized or removed from their communities.

The Canadian Association for Community Living has identified a series of goals which must be met in order to achieve their vision of community living.
1. All children should grow up as part of families and should not have to leave their family home to receive services;
2. Children should be educated in regular classes in regular schools alongside their non-handicapped peers;
3. Adults should have access to meaningful employment;
4. Adults should live in their own homes with friends of their own choosing;
5. Individuals should be supported by a network of family and friends;
6. Individuals should be able to determine what kind of services and supports they should receive.

To achieve these goals and eliminate institutions there must be dramatic changes in the legislation, programs, ideology and attitudes making up current policy. It must also be recognized that the elimination of institutions and participation in Canadian communities will create a whole new series of challenges for persons who have been labelled mentally handicapped. The most critical challenge will be inclusion in the workforce and avoidance of the poverty resulting from exclusion.

The challenges ahead are quickly put into perspective by People First President Patrick Worth, who says, ”A lot of people think that we need institutions because of all the problems we have in the community. Well, the problems in the community are nothing like what we put up with in the institution. If we’ve been strong enough to survive institutions, we’ll be strong enough to survive the community.”